Starting radiation September 2017

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  • deedledee
    deedledee Member Posts: 63
    edited September 2017

    Sounds nerve wracking Camels. My radiology team handed me a calendar with all appointments listed. Same time every day. So needed with work and busy life schedules.

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  • Mandeola
    Mandeola Member Posts: 16
    edited September 2017

    hi Anna - the CT is to confirm/assess anatomy and to ascertain exactly where the radiation is to be targeted.

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  • mbbklyn
    mbbklyn Member Posts: 3
    edited September 2017

    Hi there,

    I just joined up....

    I start 20 sessions of radiation tomorrow.....not much else to say at this point. Just hoping I don't get too tired - I will try to keep active and positive about that.

    The only surprising thing so far was today when I had the final simulation I saw a nurse who said not to take Vitamins A, C, D or E during treatment.....interesting as I ordinarily take Vitamin D every day and it's in my Calcium pill as well.....I have osteopenia so those are recommended. I guess four weeks without won't be the end of the world....

    Good luck everyone with your treatments!




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  • Canela
    Canela Member Posts: 26
    edited September 2017

    I'm surprised to hear about the Vitamin D, mbbklyn. Both my MO and RO told me to keep taking it throughout treatment, with my MO instructing me to up my dose because my levels were on the low side of normal. My RO's office gave me a long list of vitamins and supplements not to take during rad but D wasn't on it.

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  • mbbklyn
    mbbklyn Member Posts: 3
    edited September 2017

    Interesting, Canela....the paperwork I got today listed those four.....I will see the radiology doc next Tuesday and will ask him. Plus I just sent a message to my endocrinologist who is following me for my osteopenia among other issues...

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  • jgio2960
    jgio2960 Member Posts: 30
    edited September 2017

    hi ladies,

    Just wanted to send as many good luck wishes and blessing to those starting or just starting rads this month. My mom finished August 30th. (Lots of tears were shed that day good and bad.. honestly lots of tears shed for missing the wonderful staff who we will miss dearly) it is going to pass before you know it. Mom is doing good and swears mametozone and vanicream left in the fridge were a God sent. Just thought I would share for anyone looking for rad relied

    Blessings to all

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  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    Yay for, her, Jgio!

    Lyn

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  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    The scheduling snafus are crazy, Canela! Doesn't exactly inspire confidence. 😕 I would definitely mention the chaos the errors cause with your work schedule.

    Lyn

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  • SherriA
    SherriA Member Posts: 2
    edited September 2017

    Hi everyone, Finishing up my last day of radiation tomorrow. 6 1/2 weeks with 5 boosts. Whew! I made it and so can all of you. It is not as bad as you may think and if you have a cute radiation therapist, all the better. LOL! What really helps is cold pressed organic aloe vera immediately after your radiation session before you get dressed. Starting the first day is the best. I was able to not have any radiation burns until the end of the 5th week. Aquaphor is what I started using when the burns started to show and I put sterile wound pads, (the extra large kind) on the burns, with a front hooking sports bra. At night before bed I put a mixture of equal parts of hydrogen peroxide and water on a wash cloth, leave it on the burns for 10 minutes and let air dry. The aquaphor is left on all day. There is nothing to be afraid of. Really. A bump in the road of life and it will be all over before you know it and you can get back to your regular routine. You may feel tired and Matcha Tea helps a lot!! Love and hugs to all!

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  • Radmonkey
    Radmonkey Member Posts: 83
    edited September 2017

    Anybody have recommendations for pure aloe vera gel? There are so many products on Amazon. Organic and 100% pure with no alcohol, please.

    Thanks

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  • SherriA
    SherriA Member Posts: 2
    edited September 2017

    Hi! I have been using Amara Organics Aloe Vera Gel Cold Pressed Polysaccharide Rich. My daughter bought it for me on Amazon. Today is my last day of radiation and I managed to keep my skin intact up until just about the end of the 5th week. I would put it on right after radiation as I was getting dressed. Aquaphor came next with extra large surgical pads on top to keep it comfy, followed by hydrogen peroxide and water right before bed. Hope that helps

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  • jgio2960
    jgio2960 Member Posts: 30
    edited September 2017

    hi Radmonkey,

    Truthfully your best bet with Aloe is to go to the grocery store and buy aloe leaves. I suggested squeeze whatever out and put the content in a jar and put in the fridge

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    My start date is Sept 18th. I was approved for proton Radiation. Lets hope it is actually better for me! Anyone else doing Proton Radiation?

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  • Castigame
    Castigame Member Posts: 752
    edited September 2017

    shelabela, I am delighted that you are getting proton therapy. I could not because the nearest therapy was 100 miles from me. You have to give us updates.

    Sisters, I am done w #27 out of 30. #2 of 5 boosts. I know for sure my rad amount is a lot due to stage. But no rash no blister no peeling. Knock on wood I hope to stay for three more sessions. Just redness and nerve pain. The redness is starting to fade very slowly since boost started. I think it is because boost area is a lot smaller than the general rad.

    Mimi

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  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    There is a proton center near me, but when I called, I was told they only use the 6-week protocol. Since I'm node negative and the research is compelling to support only 15 or 16 sessions, I couldn't justify the extra driving distance and twice as many sessions. If not eligible for the shorter protocol, I absolutely would have tried to get approval for proton treatment. Good luck!

    Lyn

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  • deedledee
    deedledee Member Posts: 63
    edited September 2017

    Congrats SherriA. Thanks for sharing the light at the end of this part of this odd journey we find ourselves in. Really appreciate the advice and info.

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  • deedledee
    deedledee Member Posts: 63
    edited September 2017

    Congrats on the approval for Proton therapy, Shelabela. Looking forward to hearing the experience.

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  • deedledee
    deedledee Member Posts: 63
    edited September 2017

    rebamacfan1, Thinking positive thoughts the great trend continues for you.

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  • Radmonkey
    Radmonkey Member Posts: 83
    edited September 2017

    Thank you for the recommendation!

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  • lovepugs77
    lovepugs77 Member Posts: 296
    edited September 2017

    I had my simulation yesterday. Other than taking forever, it went okay. I liked the radiation therapists - there were two that worked with me today. I have to have radiation on both sides, since I had IDC in the left breast, and DCIS in the right. Since I had node involvement, they have to radiate my subclavian nodes and my supraclavicular nodes (in my neck) on the left side. Apparently the first position they had me in had my shoulders up too high. Plus they wanted to try scans with both regular breathing and breath holds, so they ended up doing six total. 2 in the original position, 2 in the new position, and then 2 in the new position with my head turned to the right, away from the side that needs the most radiation. I think they finally settled on that last position, but I was on that table for at least an hour while they positioned, scanned, consulted, talked to the planning team, etc. They didn't tell me whether we're going to do the regular breathing or the breath holds, though. Maybe they don't know yet. I should get a call in a week or two with my start date and schedule.

    In other news, the Coobie bras I ordered last week came yesterday. I will try them on today, and report back. The nurse navigator did make it a point to tell me not to wear underwire bras while I'm in treatment. Hopefully these will work for me.

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  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    I left the radiation room in tears today. I don't know why it was so much worse than the simulation Wednesday and treatment yesterday, but the shoulder pain was severe. The treatments are short, but it certainly doesn't feel that way in the moment.

    I really thought this would be the easy step other than the tedium of having to deal with it every day. I'll try adding Valtoren, a topical anti-inflammatory, next week since since it can go right to the source of the problem.

    Wishing you a nice weekend with little to no side effects, ladies!

    Lyn

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  • deedledee
    deedledee Member Posts: 63
    edited September 2017

    Sorry today was difficult. Hang in there Lyn. Hopefully you have the next two days off with the weekend.

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  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    sorry you were in so much pain. My MO told me to take 2 Tylenol before hand. Hugs

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  • Canela
    Canela Member Posts: 26
    edited September 2017

    I'm sorry, VLH.

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  • Littleone1
    Littleone1 Member Posts: 14
    edited September 2017

    started in August here. Got delayed a week due to a "phantom infection" that I really don't think I even had, after my 4th session. Am now on treatment 15 Monday out of a total 20 (16 regular, 4 boost). I am so excited to be near the end. I will tel you all this...ask your RO before you use anything on your skin. Mine wants me on vitamins but just certain ones. They also only want me using certain creams and I was told to use nothing that wasn't on the list. When the burn started to get bad (only pink before that) they prescribed a cream for me that is definitely helping. May the force be with you! I also find that music helps me a lot during treatments. I was picking ass kicking heavy metal music bc I am kicking cancers ass with every treatment but have switched to happy songs as I am getting closer to the end.

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  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    Thanks, ladies. it's hard on my kidneys, but I'm taking prescription strength Ibuprofen on treatment days. I have a few pills left of other painkillers from past surgeries, but my balance is off from neuropathy in my feet so I don't want to take those. Tylenol does nothing for me.

    Lyn

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  • Littleone1
    Littleone1 Member Posts: 14
    edited September 2017

    VLH I often wonder if Tylenol works for anyone! It's worthless to me.

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  • Canela
    Canela Member Posts: 26
    edited September 2017

    Tylenol sometimes takes the edge off slightly but it's useless compared to ibuprofen.

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  • Mari-
    Mari- Member Posts: 64
    edited September 2017

    hi ladies!

    Just had my mapping and will start radiation on the 18th. No opennings sooner!

    RebaMac-thank you for the info. It's nice to have someone a step ahead. I learned so much from my chemo group, I hope we can do the same here!

    Mandeola- like radminkey I am also a recurrence after BMX 5 years ago! Mine was less than 1cm. Here I am with a lumpectomy, chemo and now rads!

    I will have 25+5 boosters plan! Waiting to start!!

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  • Bromeliad
    Bromeliad Member Posts: 10
    edited September 2017

    Just a quick update--had my first of 15 sessions. It was over far more quickly than the mapping session. I was in and out in 15 minutes, despite having a more complicated set up due to the "prone" position. I am using a calendula lotion from Boiron. (The nurse suggested that I avoid aloe because so many of the aloe formulations contain anti-oxidant vitamins.) For those who get anxious, have you tried using a mediation app or calming music? My radiation techs allow me to plug in my iPhone so that I can listen to my choice of music; your center may also allow you to do the same. Hugs to all. Can't wait for this to all be over!

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